I have to have a hysterectomy (long, disjointed, terrified, TMI)

In My Humble Opinion
1

TL; DR version:
I’ve been told I should have at least a partial, if not a full, hysterectomy. Help me think through the situation…at least, according to my doctor’s recommendation.
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                                                                                                                                                                                                                                                                I have a large (12cm) ovarian cyst on my right ovary, which is probably the remnant of a ruptured hemorrhagic ovarian cyst that put me in the hospital last November.  I posted about it a bit after the hospitalization and a little more in another poster's thread about [laparoscopic surgery](http://boards.straightdope.com/sdmb/showthread.php?t=608464&highlight=hysterectomy).  However, I am no longer "not freaked out," as I stated in my last post on that thread.

In addition, I have a large number of medium-sized fibroid tumors in my uterus. My mother had these, and had a hysterectomy around the same age as I am now, perhaps a little older.

Here’s the thing:

I don’t want to do this. I get that the cyst has to come out - it’s increased in size since my ultrasound in May to my ultrasound yesterday. But the fibroids haven’t caused me much problems with the exception of heavy periods with lots of cramping, which I’ve developed a good routine to deal with.

I don’t want to lose my ovary, although I know that if I still have the other one, I will still have a functioning estrogen factory and my need to take artificial hormones will be decreased.

I don’t want to lose my uterus, even though I have no intention of having children. I don’t know why, it’s not rational, I just don’t, okay?

The doctor has informed me that a cystectomy is really only done for women who want to preserve their internal organs for possible later childbirth. He knows I don’t want children, so his response is “let’s just take them out.”

I’m freaking out and not thinking clearly, so I’m asking my fellow Dopers for assistance.

I don’t even know what questions to ask, where to go for non-woo information (I Googled and found the Hysterectomy Education and Resource Services foundation [HERS Foundation]), and the site just scared me to death. Anyone know if that’s woo, legit, a combination?

Do I get a second opinion?

I’ve had blood tests and other tests to rule out ovarian/uterine cancer, and all the markers are within normal limits and not indicative of cancer. Will the mass be biopsied, and a decision made to do a complete removal (including the left ovary) while I’m still under and unable to discuss options?

What do I do? What do I ask? Where do I go for advice that’s not scare-mongering but at the same time not too clinical?

I realize intellectually that millions of women, including Doper women, have had partial and full hysterectomies and I need some guidance, here.

Thanks in advance for any assistance, advice, soothing words, or “snap out of it” responses, and thanks for reading all the way through.

2

[non-mod]Most importantly – hugs to you as you deal with this scary, scary situation. [/non-mod]

[mod]That said, I’m going to move this to IMHO, the forum for medical and emotional advice. [/mod]

3

They want to remove part of your body - I can understand it freaking you out. Definitely get a second opinion, and do your research, but if this is the best treatment option, then get it booked and over with as soon as possible.

I’m sorry you have to deal with this - my sister is looking at a hysterectomy, too, for very early stage cervical cancer, but she’s desperately trying to have a baby first. I wouldn’t wish these choices on anyone.

4

Oh sweetie I’m so sorry to hear that. Get a second opinion ASAP. It’s your body not your doctor’s.

5

I had an hysterectomy by da vinci robot 2 years ago this August, and if I could have had it 20 years earlier I would have.

I had PCOS, complete with assorted cysts and a tumor on the left ovary. Previously I had the classic pain, huge clots, horrible lack of stable timing on my periods - I could have anything from a sort of normal 5 days once a month to bleeding out constantly for several months with several month gaps between bleeding, horrible cramps. Bad enough that my civilian OBGYN put me on norethindrone to stop my period entirely. We were going to do an ablation when the ultrasound check to see my endometrial lining thickness found the tumor so the hysterectomy was scheduled.

Yes, it is amazing to live with no bleeding out, no cramps, now worry about a sudden appearance of bleeding unexpectedly. The only down sides to it all are the hot flashes are annoying since I refuse to take hormones. You have to wean the body off them eventually and I figured that I would rather just go ahead and get it over with. I do have the vaginal dryness during sex, but that is what lube is made for, and you can work application into the sex play just fine. Any acne I used to have as an adult has gone away, and I have not noticed thinning hair though I have always had crappy fingernails that shatter :frowning:

If you do not want kids, go for it. I love being period free, pain free, BC pill free. PM me if you want to ask something privately, but as you see, I will discuss pretty much anything in public as I see nothing to be ashamed about in how my body functions.

6

Get a second opinion. Provided you don’t mind living with the heavy periods, there doesn’t seem to be any reason why you couldn’t just have the ovarian cyst removed. Another possible option might be combining the ovarian cyst removal with a myomectomy, where the surgeon removes only the fibroids but leaves the uterus itself in place.

7

I read somewhere, sometime, that doctors in the U.S. perform hysterectomies at a much higher rate than doctors in Western Europe, given the assumption that women in each area develop similar problems at similar rates.

Of course, that assumption could be wrong. But I think it is worth contacting at least one more doctor, and explaining that you want the cyst treated, but you really don’t want to lose the ovary or the uterus–unless there is more compelling reasons than you don’t need them because you don’t want children…

8

I turned down an operation for fibroids ofter watching a programme in which a woman said that her orgasms had altered for the worst following the op. I decided to live with the heavy periods – after all the menopause would put a stop to them eventually. My advice is to continue collecting information and advice about the consequences and the pros and cons and not get pushed into a decision.

9

I’ve heard of women having trouble with orgasms and having hot flashes, but I got lucky. Had it all out more than five years ago and have had no symptoms or changes at all. Zip. The surgery wasn’t a good time, and my digestion was more affected post-op than what had happened with other surgeries; but that was the only thing I had to deal with.

I talked to my Mom after and found out that she’d had the same experience, as had my aunt and grandma. So if you have any female relatives who have had it done, you might want to ask them what their experience was. It might, or might not, run in the family.

That said, if you want to keep as many of your living bits attached as possible, go for it. It’s a perfectly reasonable goal. The less that’s removed, the less insult to the body.

You may have to ask around to find a doctor that is practiced at doing reconstruction or other non-standard procedures. It’s easier to just go in and get everything. Most doctors aren’t trained or practiced at partial procedures* and they’re nervous about the possibility of leaving something that will cause problems later. So if you get a second opinion from a random second doctor, you’ll probably get a second recommendation for a full hysterectomy.

*in my limited experience

10

This makes more sense than it should.

(My mother’s been having issues lately with health care providers who are very good at what they do, mostly, (so far as we know) but who aren’t so good at communicating with patients who’ve never dealt with this stuff before. Even the little stuff like “OK, the tests are done, you can leave as soon as you put your bra back on”.

11

I was in a virtually identical situation when I was 37. I’d had an ovarian cyst drained laparoscopically but a couple years later had a new cyst develop and grow rapidly. In addition I had a fibroid uterus that caused heavy bleeding and ultimately anemia. Because of the rapid growth of the cyst and the size of the fibroids, I had to have an abdominal hysterectomy, and because my surgeon did not like the looks of the cabbage-sized :eek: ovarian cyst, she removed both ovaries.

My suggestions:
[ul]
[li]Get a second opinion and possibly even a third opinion, until you feel comfortable that you have all the information you need. Take someone with you, if you can, because it never hurts to have another pair of ears.[/li][li]If you and your doctor decide this is the best course, you probably want to have it done sooner rather than later, because an earlier surgery could mean you could have a less complicated laparoscopic-assisted vaginal procedure and not end up with a 12-inch scar like I have.[/li][li]Don’t underestimate the magnitude of the surgery just because it is done so commonly. I’m not saying that to frighten you. It is a major operation and requires considerable recovery time, and sometimes it’s hard to convince your family and friends that it’s not “just” a hysterectomy and that you do need to take time to heal.[/li][li]As everyone else has said, it’s your body and your decision, but don’t let the completely natural fear of the surgery itself stop you from doing what is best for your health. The same goes for being afraid that you won’t be the same person after the surgery. Since they seem to believe they can leave one ovary in, you should feel just about the same afterwards except for being rid of the bleeding concerns and the discomfort of recurring ovarian cysts.[/li][/ul]

Sending you reassuring thoughts.

12

Well, on the plus side, you wouldn’t need to worry about any of those bits going cancerous or hemorrhaging on you if you got them all removed, but I can completely understand being nervous about what is essentially a big scary surgery where you will wake up with bits missing.

There are other treatments for fibroids (embolization, for example), so maybe it’s worth looking into that and getting some good information before getting a second opinion. Is it possible that your doctor is recommending complete removal in part because you’re predisposed to bleeding problems and keeping those fibroids around is just risky? Not to freak you out, but my mother needed an emergency hysterectomy when a fibroid tumor went nuts and they couldn’t stop the bleeding. It’s far better to have a planned surgery in a more controlled situation than to be yanked up to the OR in a panic. No time to think straight and consent in a meaningful way, and far more terrifying than knowing you’re going for surgery next Wednesday at 2pm.

If they aren’t going in thinking it’s cancer, then they’re not likely to do anything like that, but if they open you up and find something suspicious, they will send the ovary down to pathology where it will get flash-frozen, sectioned, and examined for malignancy, with a report getting back to the OR quickly enough for them to act on it. Your surgeon should discuss the possible scenarios and your wishes with you before the surgery, but yeah, there is a chance they’ll end up taking more than you’d like if they have a good reason to do so. If you say no, don’t take it all, but then the uterus starts bleeding and your life is at risk, they won’t hesitate.

13

Unless I am missing something, your doctor can’t forcibly remove your uterus without your consent. Why is a second opinion needed? Tell him no, you are keeping it and just remove the fucking cyst thankyouverymuch.

14

FWIW, I’m a guy but I can totally relate to this. I don’t think I ever want any kids, but if I find out somehow that I’m sterile or become that way as a result of some sort of treatment, I’ll be really upset. It makes no sense at all.

So I personally don’t think it’s unreasonable to discuss the pros and cons of retaining what you can (assuming you haven’t already), even if you worry that the doctor will pull a “Well who cares, you’re not having kids anyway!” Maybe there’s a good medical reason to do the whole shebang, but…couldn’t hurt to ask.

15

WAG: The doctor might also think you’re an idiot/tell you he doesn’t do it that way, and tell you to go see someone else. So a second opinion might be required anyway.

16

It IS rational, OK. You’re talking about having a body part removed. An amputation, of a sort. It’s NORMAL to be hesitant (if not outright screaming NOOOOO!) to such a thing. Just because it’s a body part you don’t normally see makes it no less a body part. It’s OK to find that upsetting. I don’t need my tonsils or appendix, but if I was told I needed them removed I would hardly be skipping along with joy. Likewise, removal of a uterus is nothing to blow off because 1) it’s major surgery and 2) it’s part of your body.

Whether or not you intend to have children is irrelevant - it’s your body. It would be weird if you weren’t reluctant to have bits removed. In other words, you’re NORMAL.

Sounds like (to me) it’s easier for him to do it that way. I find it hard to believe that you’d be told if you aren’t going to have kids you don’t get to keep a body part, but hey, crap has been foisted upon women for ages.

Yes, ask for a second opinion. Even a third. It’s your right. It’s something you SHOULD do before major surgery (which this is) anyway.

I don’t want to alarm you, but such things have been known to happen. Given your doc is already pressuring you to “just take it all out” it’s something I’d worry about.

Obviously, of course, if they biopsied it and DID find something Very Bad you’d want it out… but sometimes docs get it into their heads to do precautionary things patients don’t really want.

It’s YOUR body. Since this is not an emergency YOU make the decision.

17

The thing is that Kolga is (understandably) upset about this. I don’t blame her at all. But it may also not be as cut and dried as that.

Kolga may be sitting in the dr’s office, hearing him talk and spew medical terms and ultimately hears “There’s something very wrong, I think a hysterectomy is the best way to go, it’s not like you want to have children anyway”

What the doctor may have said, or *may have thought he said *was “There’s something very wrong. Normally we would do a full hysterectomy for a woman who doesn’t want to have children, or who is done having children. A cystectomy is what we would try to do for women who want to keep their reproductive system intact to have children in the future, but you have expressed that you’re in the former rather than the latter camp. This is why I think a hysterectomy might be the way to go”

This is why a second opinion or even a third is important. If two or three doctors are all saying “We really think the whole shebang needs to come out” then it’s a pretty good guess to say that it really does need to come out. If one doctor says “Take it all!” and another one or two say “Well, no, let’s try a cystectomy to start with” then it’s a pretty good indicator the first doctor is not the right fit and another doctor might be the one you need.

18

I am so, so very grateful for all of your suggestions. I have a list of questions, comments, and concerns developed from your replies and from my Googling, and I am feeling a bit less completely freaked out (the yoga class probably helped with that, too).

There’s so much to respond to, and I don’t want to make a huge, point by point response, so I’ll just say that you have all been very helpful.

I was hoping my post wouldn’t get locked down as requesting medical advice, and I am glad it did not.

I will definitely seek a second (and possibly a third) opinion. I am leaning toward, if at all possible, a cystectomy (and if the ovary is too involved with the cyst, an oophorectomy of the right ovary) with possible myoectomies for the fibroids, and a back-up plan for removal of the uterus only as a last resort.

Much gratitude.

19

This is really good advice.

I see that the good news is that fibroids don’t tend to form after menopause, but if you have multiple fibroids removed, you’re looking at a 26% chance of needing further surgery. Talk to more doctors, but try to keep an open mind and do the best thing for your overall health.

20

I think everybody here is giving you good suggestions. Do get a second opinion. If you think it would help, maybe you should call your doctor and get him to explain, one more time, why he’s recommending a hysterectomy, now that you’ve had a little more time to digest what he said. Sometimes it’s hard to get it all the first time, especially when the news is upsetting.

The one thing I will say is; get another opinion, and make sure you get enough information. But please be careful that you don’t just keep looking until you find what you want to hear.

Whatever you decide, I hope it goes well for you.